Undiagnosable or Sustained Ignorance?

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Undiagnosable
Over the last several years, I have born witness to immense human suffering; young women wracked by pain, with organs diseased, struggling to survive; some have seizures, brain infections are common, many have nerve damage, some develop cancer, and others die; sometimes by their own hands, so desperate for relief that suicide seems like a legitimate option, and other times by the cumulative effects of bad medicine.

These women are poked and prodded by physicians, hospitalized for extended periods, surgery after surgery, failed treatment after failed treatment, with no hope in sight. Their pain grows. Their symptoms worsen. Their suffering continues. In many cases, they are dropped by their physicians because their conditions are too complex to understand and too difficult to manage. They are undiagnosable, often untreatable, and their struggles are mostly invisible to the public.

They are your sisters, your mothers, your wives, your daughters, your girlfriends and colleagues. They are the 50% of the population that medical science ignores and the pharmaceutical industry preys upon. They are women. This is their story. And as a woman, a mom, a scientist and an advocate for women’s health– this is my story too. As a human being, how can it not be your story too?

Let me point you to the personal stories of the women I work with. Many were healthy once, prior to a medication or vaccine adverse reaction or ill-conceived surgery or surgical device. Some were not so healthy, suffering from one of the many undiagnosable women’s health conditions. But all of the women I work with have one thing in common – they fell victim to the promise of medical science. They believed that their doctors understood the effects of the drugs they were prescribed. They believed in the surgical treatment their doctor suggested. They believed that their doctors could find the source of their pain and treat it. They were wrong.

Meet Alisa, Alexis, Nicole, Britt, Nina, Ashley, Tracie, Susan, Danielle, Michelle, Kerri, Rosemary, Jordan, Philippa, Lisa, Angela, Kelsey, Rachel, Roxie, Rosalie, Heather, Jill, Louise, Sydney, Suki, Destini, Lisa, Emily, Debra, Patti, BJS, Joan, HollyMAK, DES Daughter, Lisbeth, Robin, WS, Sarah, Zoe, Gabriella, Erika, Janet, Yuka, Sharne, SWC, Stacey, Bette, Amber, Momoka, Yumi, Dorothy, Samantha, Kristin, Katelyn, Jean, Sarah M., ErikaCharlotte, Kerry, Sharon, Taylor, Brandi, Alisen, Jess, J.H., Alex, Sandra, Theresa, Ann, Connie, Jessica, Kristyn, Bernadette, MJ, Marit, Alyson, Detrease, Claudia, Kristen G., Annie, Rebecca, Grace, JuliaBrooke, Anna-Karin, BrittanyKristen S., CS, Asha, Anne, Leslie, Sharida, Lisa P., Daniel’s wife, AnnieJMR, June, Lisa MH, Casey, Margaret, Nicole, Stacey R., Stephanie, Karen, and all the men and women who shared their stories anonymously and the millions of others suffering in silence.

I have come to realize that their suffering is not uncommon. It is not a fluke. They are not the outliers of modern medicine; rather, they are the norm. Perhaps, the details of a particular story change somewhat, but every woman (and more and more men) has a health story; one that is marked by unending medical confusion and half-witted diagnoses based, not on a deep understanding, but on wild-assed guesses levied by pharmaceutical marketing. Indeed, if the illness does not have a medication then, in the eyes of all but the most progressive physicians, it does not exist. That may explain why the prevalence of medically unexplained symptoms ranges from 25-75% in outpatient settings, with pain being the most common.

Worse yet, when a medication elicits an adverse reaction, especially one that is chronic and complex, the patient is left to fend for themselves. It takes decades for recognition that a medication or vaccine might evoke complex reactions beyond those associated with anaphylaxis. The statistics for women’s healthcare back this up.

Did you know that it takes 5-10 years to diagnose common women’s health conditions and that once diagnosed there are often no medications or effective treatment options? You’d think that that since the development of modern medicine, someone, somewhere, would figure out how to diagnose and effectively treat some of these conditions? You’d be wrong.

Did you know that only 30% of Ob/Gyn Clinical Practice Guidelines are based on actual data – 70% are based on consensus? Sit with that one for a minute. You’d have a better chance of getting an accurate diagnosis with a dartboard.

Did you know that before the mid-1990s, women were prohibited from being in clinical trials – meaning that no medications developed before then were ever tested on women? Hundreds of medications currently on the market were developed before women were permitted into clinical trials.

Did you know that even today women represent only about 30% of early clinical trial participants? It is in the early trials that safety and efficacy data are established. Not even female rodents were used in testing drugs that would be used in the female population until 2014.

Did you know that even when women are included in clinical trials, there is no mandate to analyze the safety or efficacy data by sex – to see if a particular medication causes more adverse reactions in women, or even works in women? It took 20 years to realize Ambien dosing for women was different than for men. And by different, I mean, it should have been half. For the twenty years this drug was on the market women were over-dosing because no one bothered to consider sex as a variable in pharmacokinetic research.

Did you know that women account for disproportionately more serious and more frequent adverse reactions and that most of the major drug recalls in recent history were due to the adverse events experienced by women?

Nope, you probably didn’t know that because it’s not common knowledge. Unless, you are one of the millions of individuals suffering from an undiagnosable, untreatable, unknowable disease or adverse reaction, then it is all too real.

And though I focus of women’s health, men are not completely risk free. The British Medical Journal reports that when 3000 commonly used medications were reviewed, less than 50% had the appropriate data to suggest any efficacy whatsoever. Worse yet, because of publication bias, fraud, and the closed clinical trials system allows pharmaceutical companies hide their negative results behind the auspices of intellectual property, when already approved medications are re-evaluated using the previously closed trial data, the recommendations for use changed for 93% of the medications – 93%. For cancer drugs, efficacy could be confirmed in only 11% of the studies reanalyzed. That’s just wrong. We can do better. We must do better.

As I rattle off these stats, you might be thinking to yourself, ‘but Chandler, those adverse reactions, those drug side effects are rare, they wouldn’t, they couldn’t, happen to me or my family, we’re healthy.’  Think again.

According to the Mayo Clinic, 70% of all Americans take at least one pharmaceutical chronically, 50% take two, and 20% take five or more medications, even during pregnancy where 80% of women take at least one medications and 30% take four or more, an increase of more than 60% over the last 15 years. And don’t get me started about administering vaccines to pregnant women under the auspices of protecting the fetus. There are no data suggesting that a vaccine during pregnancy is anything more than a toxic cocktail that both mom and fetus have to survive, and many do not. None of these medications or vaccinations have ever been tested for safety or efficacy during pregnancy, read the package inserts. Similarly, infants, children and adolescents represent a key demographics for pharmaceutical marketing and once again, only 10-20% of pediatric medications were tested on children. We have no idea what illnesses we are initiating by our overuse of medications and vaccines. None. And therein lies the problem.

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1 Comment

  1. Absolutely great and tied to real systems thinking, Chandler, this piece, so thanks for putting this global problem of science gone amok tied to the profit-super profit-obscene profit mentality front and center of Hormones Matter’s mission: investigate these unproven meds, unprovable benefits . . . the synergistic variants of all the chemicals and toxins we have in the human body tied to new chemicals and drugs can never be tied beyond a Capitalist Scientific doubt to one suspected carcinogen or life threatening compound. .

    I’ve had my own hand slapping for speaking out (barely) against all the PR/propaganda around Merck’s Gardasil.

    https://dissidentvoice.org/2017/10/my-fate-as-a-social-worker-sealed-by-a-vaccine-named-gardasil/

    As a journalist, I had the honor of hosting Sonia Shah on my radio show in Spokane 11 years ago. Her book, Body Hunters, tells the story of how science has been using profit-driven economics to exploit and kill people worldwide:

    Body Hunters: Testing New Drugs on the World’s Poorest Patients

    Foreword by John Le Carre; Winner, Prix Prescrire award, 2008; Library Journal‘s Best Consumer Health Books, 2006; Available in French, Spanish, Italian, German, Portuguese, Japanese, and Korean

    http://soniashah.com/books/the-body-hunters/

    QUOTE:
    Imagine the uproar if dozens of drug-trial patients in America were to perish from deadly side effects known to the FDA. Consider the commotion if AIDS babies in Europe were to die while being administered placebos rather than potentially life-saving drugs. These scandals did happen—just elsewhere. In The Body Hunters, investigative journalist Sonia Shah describes drug trials in places like India and Zambia that would have occasioned outrage if conducted in the developed world.

    The Body Hunters describes how the multinational pharmaceutical industry, in its quest to develop lucrative new drugs, has begun quietly exporting its clinical research business to the developing world, where ethical oversight is minimal, and desperate patients abundant. Faced with crumbling facilities, minuscule budgets and towering health crises, developing countries often encourage these very trials, even as they cause scarce resources to be diverted from providing care toward the business of servicing drug companies. END QUOTE

    Finally, here is a documentary from Colombian journalist, Mario Lamo,

    https://www.youtube.com/watch?v=LTFQdgelzNo

    Gardasil is shattering and ending young lives around the world. These interviews show the testimonies of victims of the HPV vaccine and the damage caused by it, accompanied by a song especially composed for this documentary.

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